Tag Archives: treatment

Dying from cancer in the 21st century

I used to keep an electronic diary.

Thirteen years ago today – on 21st April 2001 – my father was in hospital.

Two days before, he had had a cancer operation.

To set the scene, this first extract from my diary is on…

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Me (aged 1) with father near home in Campbeltown, Scotland

My father & me (aged 1) near home in Campbeltown, Scotland

Friday 20th April 2001

I stopped in at the hospital to see my father. He had colour in his cheeks, though his hands and lower arms were a bit yellow (possibly because of the tubes and injections he had had in them). He was looking much more awake and bright-eyed than I had thought he would be and his mind was OK, though he had various tubes in his arms, a see-through oxygen mask over his nose and mouth, a grey plastic bulldog clip on one finger (which I think is for blood pressure readings) and he said he felt “exhausted”.

He told me he had slept off-and-on last night. This morning, he was OK but this afternoon he was feeling (and was) sick and had pain in his lower stomach. He said it was odd because, with an oxygen mask on, he was sick along tubes. There were, he said three or four people (he seemed to say doctors) looking after him in the afternoon, giving him painkillers, anti-vomit injections and, he said, two bags of blood because he had a low blood count.

This morning, the surgeon/consultant had come to check on him. The surgeon/consultant said the tumour he removed had been much, much bigger than he had thought it was going to be and – being so big – it had affected either the liver or the kidney (my father was unsure). My father seemed to say the large tumour had rubbed against whichever internal organ it was, though I was not clear if the liver or kidney had been ‘affected’ by the rubbing or if it was a spread of the cancer itself. The surgeon asked my father to tell me he wanted to see me and my mother, if possible, at 10.00am tomorrow morning (on his normal rounds), so he could tell us what he had told my father.

“He said I would need more medical treatment,” my father told me.

“Surgery?” I asked: “He’d need to operate again?”

“No,” insisted my father. “He made sure he emphasised it was medical treatment… though I don’t know what that means.”

Just before I left, my father took his lower, then his upper teeth out and a nurse put the two sets in a glass of water. He was already without his spectacles and his hearing aid. I left him sans teeth, sans eyes, sans everything.

At my parents’ home, I asked my mother if she had slept last night. She said she kept waking up. “I’d be asleep,” she told me, “And I’d stretch my leg across the bed and it wouldn’t touch his leg because he wasn’t lying there next to me.”

My parents in their twenties in the 1940s

My parents when they were in their twenties in the 1940s

Saturday 21st April

My mother and I went in to see my father in hospital this morning and I managed by accident to bump into the consultant on the stairs, without my mother, so I had a chat with him.

The tumour was, as my father had told me, much bigger than the consultant had expected and had affected the pancreas and part of the liver. He had decided not to remove the extra bit but to leave it in because really, he said, it was safer than just chopping away at things. He told me he is not going to operate on it and says the liver is a relatively large thing and there is a small area affected at the moment.

After my father gets out, he has an appointment to see the consultant on Wednesday 16th May – that will be a good week, as my mother is seeing HER Consultant on Monday 14th. My father’s meeting is to decide what to do about what is left. Whether or not to do chemotherapy. The consultant told me he is inclined not to do chemo as, “frankly, sometimes it has an effect and sometimes it has no effect at all” and, in this case, it would probably not make any difference.

Also, I guess, doing it on any 82 year-old man is not a good idea.

So, basically, my father will not be cured of the existing problem. I asked the consultant specifically about life expectancy and he replied – commendably honestly I thought – “We really have no idea how long things like this will take”. He meant doctors are really just plucking a random figure from the sky if they do a guestimate.

His guestimate for a worse-case scenario was that – if the disease suddenly vastly accelerated which he does not think it will – death would be “in a few months”.

I asked what the longest guess might be: “Five or six years?”

He replied: “Oh, not as long as that. He’s an 82 year old man, after all. Eighteen months or so.”

But, as he says, it is really just plucking figures from the ether.

I said I was amazed that my father had never been in any pain at all with the cancer itself (he now has post-operative pain) and asked if things would deteriorate into extreme pain. The consultant’s reply was (I paraphrase):

“Again, one can’t tell. It might or might not happen but there is no particular reason why it should suddenly change its nature.”

I did not quite know what to tell my mother about this, so told her the consultant is happy with my father’s recovery, but that a part of the liver has been infected – I did not mention the pancreas – and that the meeting on 16th May is to talk about possible treatment including chemotherapy.

At 10.00am, the consultant told her the tumour was much bigger than expected and that he had found “a secondary” in the liver.

Basically, she knows what the consultant told me except for my specific question about life expectancy.

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My parents in Edinburgh, perhaps in the 1970s. Who knows?

My parents in Edinburgh, perhaps in the 1970s. Sometime.

My father died of cancer on 27th June 2001.

My mother died of a heart attack on 13th January 2007.

So it goes.

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Surrealist comedy performer Martin Soan goes into an Essex mental asylum

Another comedian not going to the Edinburgh Fringe this year

Martin Soan, creator of highly original comic ideas…

When I was newly 18, I went voluntarily into a mental asylum as an in-patient because I tried to kill myself. The doctors thought it required treatment; I thought it was a sensible life-choice.

When performer Martin Soan was 17, he voluntarily went into a mental asylum as a member of staff: to work as a porter.

He has been staying with me for the last couple of days.

“When I was 15, my parents won the Football Pools,” he told me and my eternally-un-named friend last night over dinner. “We moved from the East End of London to a village called Earls Colne near Colchester in Essex and I went off the rails. I had been doing really well in the East End – I took pride in my schoolwork; I wasn’t top of the class, but I enjoyed endeavouring. Within months of moving out to Essex, I drifted into odd behaviour, taking drugs and getting into trouble with the police.”

“You left school at 16?” I asked.

“Yes,” said Martin, “but, by then, aged 15, I’d moved into a squat in Colchester and I’d got made a ward of court because I got caught stealing…”

“Stealing what?” I asked.

“Carpet from a doctor’s office.”

“Was it open?” I asked.

“It was night time,” said Martin. “I got made a ward of court, went home for a matter of weeks, got a night job working for Courtaulds for a few months – weaving things. Water jet looms. Then I got the job at the mental hospital – Severalls Hospital, just outside Colchester in Essex. It was a huge hospital – 300 acres – It was a couple of miles away from Turners Village, a children’s psychiatric hospital which eventually got done for child abuse, neglect, cruelty to patients, everything.”

“Why did you decide to work in a mental home?” I asked.

A recent photo of Severalls Hospital , which closed in 1997

A recent photo of Severalls Hospital, which closed in 1997

“Because I had a fear of people with mental health problems,” he explained. “I grew up with my cousin who was mentally and physically handicapped; he was maybe two years older than me. He had a droopy mouth and a strange walk. He used to clomp along. He was lovely and we used to play together, but he used to get me in these strangleholds and embraces – it was out of love, I suppose. He used to terrify me; he used to half-strangle me. I was always terrified I was going to get really, really hurt by him.

“He was not doing it viciously or vindictively at all. He was just clumsy and didn’t know his own strength. He was incredibly strong.”

“When I was at college,” I said, “I went and interviewed a psychiatrist at the mental hospital where I had been a patient and, sitting in the corridor waiting to see him, I could tell which people passing me were patients and which were staff. The patients walked slower, because they had been drugged so heavily and had no life left in them.”

“Drugs are the straitjacket now,” said Martin. “They used to lock ‘em up and put ‘em in straitjackets because people were frightened of  ’em. Now drugs do exactly the same thing. It stops them being a problem.”

“Were some people in there for life?” I asked.

“There was Albert,” replied Martin. “He had these huge, huge, Denis Healey type eyebrows and a huge belly. He was ancient and used to help me do the laundry and go round the wards with me on these electric vehicles.

“When he was younger, Albert had wounded someone in a field with a shotgun. Accidentally. He didn’t mean to shoot them; he had not intended to kill them and he just wounded them. It was a mistake.”

“Was he simple?” I asked.

“By the time I met him,” Martin explained, “he had a wonderful logic about him, but he had been completely institutionalised and drugged out of his head; he was a drugged, dribbling idiot, basically.

“There was another guy who had a limp. You just had to say the name of one football team to him. I would say West Ham and he would say West Ham 3 Chelsea 2 – Newcastle United 2 Hull City 2 and he would do the latest scores each week. He would walk down the corridors saying the football scores.

“My job being a porter was to do the laundry, take meals and drugs to the wards and all that. There was a morgue there and I had to label the bodies and put them on the things you slid them into the fridges on.”

“You did that by yourself?” asked my eternally-un-named friend.

Martin with my eternally-un-named friend yesterday

Martin Soan with my eternally-un-named friend yesterday

“Most of them were thin and weighed less than a sack of potatoes,” explained Martin.

“How often did people die?” asked my eternally-un-named friend.

“Severalls Hospital was big. An average ward held about 40, so I would guess it had an absolute minimum of about 800 people in it… It had its own bank and shops. There were wards in the main hospital and then in the grounds were satellite wards like army barracks around this huge complex – secure wards and medical wards because there was a lot of self-mutilation and health problems.”

“So every week someone would die?” asked my eternally-un-named friend.

“Oh yeah,” Martin replied immediately. “There was a mixture of people there. A lot of ordinary Alzheimer’s cases. Just old people and some very ordinary people who shouldn’t have been there at all. Like Albert, who made a mistake and wounded someone with a shotgun and they put him in a mental hospital.

“But there were some characters who were completely bonkers. I was walking to one of the outside wards and suddenly this old woman comes out of the forest completely stark bonkers naked and just throws herself on me so I’m on the ground with her screaming something about me not bringing the ring to the wedding.”

“Things like that must have really done-in your 17 or 18 year-old brain,” I suggested.

“I think I just needed to confront my fears,” said Martin. “The problem was my physical fear of my cousin and I had mixed it up in my mind with being frightened of all mad people or very extrovert type people. But, very quickly, I realised it wasn’t them I was frightened of. It was my own mental state. As soon as I sussed that, I just ended up with another set of problems.”

“What mental state?” I asked.

“My mental state,” said Martin.

Martin Soan got high with B.A.

Martin Soan, accomplished surrealist

“Why?” I asked. “Because you were close to the brink yourself? I understand that feeling.”

“Yes, that,” he replied. “And Martin, just stop worrying about stuff. Stop worrying about your petty fears. There are people out there with far worse problems. It normalised what’s going on in your own head. At the time, I was taking lots of LSD. I used to take it at weekends. On the rota, you had almost four days off between your work, so you could take a load of drugs and sober up and go back in. But, one Sunday afternoon, when there was a skeleton staff and no authority figures in, I went in completely high on acid.”

“Were you hallucinating?”  I asked.

“Some of the time, yeah. But I’d been taking so much it had become the norm. You acclimatise to it. So I knew I could go off into little reveries of surreal imagery by focussing on the minutiae of the world around me and then, if something happened, I could snap myself out of it.”

“But,” I said, “if you’d been high on acid when some naked woman had leapt out of the woods onto you, that would have REALLY done your head in.”

“I suppose so,” said Martin. “But it all becomes the norm. It’s just mundane in the end. I realised what I had to be careful of was my own brain, not other people’s.”

“Were you interested in performing comedy before you worked in the mental asylum?” I asked.

“I was doing Punch & Judy shows all the way through this,” said Martin, “but my comedy was always a bit weird. I used to do surreal puppetry when I was about 16.”

“People being mad and people being creative is very similar,” I said, “because their minds are going off at wild tangents. If you do surreal humour, you know you are being surreal, whereas mad people don’t know they’re being surreal. Maybe comedy performers are controlling their interesting lateral thinking and mad people are not.”

“With the surreal puppetry,” said Martin, “I thought I can’t do that sort of stuff, because no-one’s going to understand me. So I ended up doing Punch & Judy shows but, within that, I started bending, perverting the story of Punch & Judy.”

Martin’s Punch & Judy shows were called The Greatest Show On Legs.

“Did you always do adult Punch & Judy?” I asked.

“Yes,” said Martin, “but it wasn’t aimed at adults. “It was just my interpretation of Punch & Judy.”

“I thought it was rude?” I asked.

The Greatest Show on Legs in their prime

The Greatest Show on Legs in a later incarnation (from left) Malcolm Hardee, Steve Bowdidge, Martin Soan

“It did start getting rude,” agreed Martin, “and, when Malcolm Hardee joined The Greatest Show On Legs it was fully-fledged and took off as a rude Punch & Judy show.”

“And, at Severalls,” I prompted, “you did lots of different things as a porter…”

“We rotated all the jobs,” said Martin. “One of them was to escort patients up to the ECT ward.”

“I didn’t know they still did ECT – electro-convulsive therapy – in those days,” I said.

“I was disturbed they were still doing it,” replied Martin.

“Around which year was this?” I asked.

“1970. Even though it was the Seventies, it was very Victorian in all sorts of ways. They hadn’t moved on very much. When you dropped them off for ECT, even though they were troubled, they were animated – they had life. Even if they were paranoid. Paranoia takes up a lot of energy. But, after they had had ECT, they were lethargic, uncommunicative. It had just robbed them of the life, really. They couldn’t remember what they were upset about but they still had this Oh fuck, there’s something wrong with me feeling. From what I saw, it didn’t do any good.

“There was a girl patient I found attractive. She had dark hair and stunning eyes. I wasn’t being anything other than friendly. Nothing sexual. She was just a lovely person; very friendly. I had this motor bike and there was this rock concert nearby. I took her off to the concert; we had a couple of beers and might have smoked a joint, then I dropped her off back at the ward.

“The Unit Administrator had me up and told me: There’s no way you socialise with the patients and I thought Well, that’s a bit heavy. Yes, it was unprofessional, but I was only a porter, not a doctor. I wasn’t trying to take advantage of her. I was young and didn’t understand the consequences, the trouble I could be getting myself into.

“I don’t know if it was connected, but shortly afterwards I was sent to pick up the girl and take her to the ECT ward. And that was a killer because afterwards… to see this lovely girl with her soul ripped out of her basically. It was horrible.”

“Why did you leave Severalls Hospital?” I asked.

“After what happened to that girl,” said Martin, “I suppose I started turning psychotic myself so, in the end, I walked out. I didn’t want to work there any more.  I was conscientious, I think I did my job well, but the Head Porter kept having a go at me.”

“How did your bosses react to you wanting to leave?” I asked.

“They were all worried and freaked out,” said Martin. “No-one had walked out before. All the porters were either young like me or had been there forever. Those jobs were for life. There had been a few incidents of staff becoming patients. I used to have my dinner and tea breaks in the patients’ canteen because I found the staff canteen very stuffy because they had behavioural norms. There was a formality about it and I got… not panic attacks as such, but… In the patients’ canteen, it was like the bar in Star Wars. I just sat down and they loved me and I liked being there; I could have a laugh with them because, like I said, a lot of them shouldn’t have been in there.”

“Anyone who thinks differently,” I said, “risks getting labelled as mad.”

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Comedian Matt Roper’s addiction treatment gets upstaged by Chris Dangerfield’s continuing addiction

Matt Roper yesterday: concerned at Chris Dangerfield’s addiction tales

Matt Roper yesterday: concerned at Chris addiction tales

It was comedian Matt Roper’s own fault not mine. It really was.

He is trying to kick his nicotine habit in Totnes and he was up in London for a casting session on a film. So we decided to meet up for a chat about his Buddhist-like non-smoking treatment and there might be a blog in it for me. But the trouble was, before we met at Bar Italia in Soho, Matt had perhaps foolishly invited Chris Dangerfield to join us – he lives nearby.

Chris joined us briefly, then said he had to go off and do something, so Matt and I had time to start our chat.

“I’m organising my funeral on Thursday this week,” Matt told me.

“You mean the living wake you told me about a few weeks ago?” I asked.

“No,” said Matt. “I still might have a living wake before I go away to New York at the end of November.”

“New York?” I asked.

“A mate of mine is on Broadway,” Matt explained. “And (comedian) Rick Shapiro and his wife Tracey have invited me to Thanksgiving in New Jersey.”

“How is Rick?” I asked.

“He’s fine,” said Matt. “You know he was mis-diagnosed and mis-prescribed. He had a heart attack, he had amnesia and he fell in love with his bedside lamp.”

“Was it just an infatuation or was it the real thing?” I asked.

“I think it was probably an infatuation,” said Matt. “The shape of his lamp, you know…”

“It was a one light stand?” I asked.

“His vision was all gone,” said Matt, “and he was on a lot of medical drugs. It might have been an Anglepoise or something quite curvy. Basically, he was diagnosed with Parkinson’s Disease and he was mis-diagnosed in the months before and he was mis-medicated… But he’s getting stronger and more lucid.”

“So you were going to hold a living wake for yourself before you go out to the States,” I said, “but instead you’re now going to organise your own funeral?”

“No,” said Matt. “Not instead of. As well as. Death feels quite close to me. Both my parents died quite early and my health hasn’t been the best this past year. I’d rather everything is sorted out now and not a mess when…”

At this point, Chris Dangerfield returned.

“I’m talking about death,” Matt told him. “I’m organising my funeral.”

Chris laughed.

“I’m quite at peace with death,” mused Matt. “Obviously, I don’t want it to happen just yet, but there’s a guy who arranges alternative funerals in Totnes, so I’m going to put some money into an account and give him a music playlist and then it’s all sorted.”

“Where’s the logic in all that?” asked Chris Dangerfield. “Let other people pay for your funeral.”

“You’re looking surprisingly healthy,” I said to Chris. “Considering what’s happening in your life.”

Chris Dangerfield yesterday with abandoned police bike behind

Chris Dangerfield yesterday with police bike behind

“I’m a connoisseur of the poppy,” replied Chris, “by which I mean a victim of hideous and chronic addiction. My habit is China White. That’s what it’s called, but it’s actually from Vietnam. It doesn’t need any citric acid to break it down; it’ll break down in water. But the point is, I’ve been getting it on the Silk Road, the ‘deep web’, as we spoke about last time I saw you.

“I’m spoiled in a sort of suicidally-spoiled way. When I can’t get China White, I have to get street heroin and that’s what I just got and I have to put so much fucking in it’s like gravy by the end…”

“You still look well,” I said.

“I got rid of a glamour model’s veins intentionally as a cosmetic procedure,” said Chris. “She was talking to me about how citric acid damages veins. My arms have got none. They used to be like an adult male. Now I’m like a child. Citric damages your veins: they retract from the surface of the skin.

“So I told her that and she got me to do it so her skin would be smooth. I wouldn’t do that to anyone now. It’s damaging and unnecessary. But, at the time, I said Yeah, I’ll help you out. So, every day, I’d give her a citric injection and she lost all her veins. Mine, as you see, have gone.”

He showed us his smooth right arm.

“And you’ve lost the veins on the back of your hands,” I agreed.

“Yeah,” said Chris. “Look at your hands, John. Loads of veins visible. Mine have gone.”

“You can’t have lost your veins,” I said.

“They do. They do. They collapse,” said Chris. “They die. Sometimes they fall under and separate. Don’t make it a smack blog, John. We got better things to talk about than that, surely?”

“My thrombosis,” suggested Matt. “You’re on heroin and looking healthy. And I’m the one who’s on his death bed.”

“If you don’t have veins in your hand,” I asked Chris, “how does the blood get to your fingers?”

“Capillaries,” answered Chris, “which are smaller veins.”

“I was always shit at science,” I said.

“I’ve seen people stick needles under their fingernails,” said Chris. “What I went to, before I went to my groin, I…”

“Don’t forget this is being recorded,” I said.

“I don’t give a fuck,” said Chris. “What it is is, because you’re pulling more blood into the solution, it’ll congeal and… so what you do is snap the needle off and stick it up your bum. And, when there’s ten of you living in a squat in Bethnal Green and you’re all doing that 20 or 25 times a day and you’re not very clean about it and you meet a girl at Soho House…

“We’d all be in Soho House in lovely suits charming all these lovely women and saying Oh, come back to our house and when they came back to the squat in Bethnal Green… One of the rooms had no floorboards, because we’d burnt them all for heat, but the gaps were maybe 6 inches deep with poo-covered syringes.

“Do the maths. There were maybe ten of us there, on and off, doing maybe 20 a day – that’s 200 a day – nearly 1,500 a week for a couple of years. Multiply it by 52 or 104…”

“I think,” said Matt, “that Chris is a natural choice to lead Bethnal Green’s new tourism campaign.”

“I loved living there, though,” said Chris. “I really did. I loved it.”

“You told me,” I said, “that you’d tried to get off the smack recently but you’d failed.”

A bag of China White heroin

Is China White heroin equivalent to a packet of cigarettes?

“I had a friend the other day say to me I just don’t understand why you keep doing it and I said You smoke tobacco, yeah? and he said Yeah and I said Bronchitis, septicemia, cancer, your clothes stink, you stink, your teeth are yellow, your fingers are yellow, it costs you more than crack cocaine now. You wanna stop? He said Yeah, well... and I asked Well, why don’t you? It’s the same. There’s no real difference. There’s damage and how it affects your lifestyle, but the basic reality of being powerless over a substance – or behaviour – is the same. I would do anything to be clean. And, when I’m clean, I’d do anything to be using.”

“It’s a bit like being from New Zealand,” I suggested. “When New Zealanders are actually there, they want to leave and, when they’re away from it, they want to go back.”

“Over the last 25 years of using,” said Chris, “I’ve had a few clean years and they were the best years.”

“And now you make good money on your lock-picking business,” I prompted.

“With no financial investment,” said Chris, “just a good reputation and a mailing list, I can sell a product before I’ve bought it. So I send out to the mailing list… Say 500 people respond with a purchase… then the money’s in my account. The product arrives and I send it out. There’s only a 4-day turnaround. On this latest product, the profit after tax is about £25,000.”

“Is that actually true?” I asked.

“What do you mean Is it true??” Chris asked. “John, if I’m going to lie, it’s going to be better than I’ve earned some money – It’s going to be I STOLE some money. It’s easy to make money. I don’t understand people who can’t make money.

“I’ve a BBC TV documentary coming up. Essentially, I was walking round Soho trying to put forward responsible arguments about my lifestyle to a girl and her production team.”

“Your sexual lifestyle?” I asked.

“Yeah,” said Chris. “Well, some of it. Also Rupert Everett is interviewing me for Channel 4 in a couple of weeks. That’ll be fun. I thought I’d be clean by then. His autobiography’s amazing.”

“What’s he interviewing you about?” I asked.

“Same thing, probably. I’ll confess things and they give me some publicity. And I’m doing a BBC Radio 4 show for Hardeep Singh Kohli where he has dinner with people.”

“Are you performing at the Edinburgh Fringe next year?” I asked.

“Yeah.”

“What’s the show called?” I asked.

He told us.

Matt and I laughed out loud.

“I’ll only perform it three or four times before,” said Chris, “then the full run at the Fringe. They’ll never let me put that title in the Fringe Programme, though.”

“There won’t be a problem printing it in the Programme,” I said. “The words are OK.”

He then described the poster design.

“They may well,” I said, “hang you from a lamp post in Edinburgh.”

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